I'm pretty new on here but have already initiated my fair share of threads :) My signature tells my story.
Some of you may know that I'd been questioning my ILADS-referred LLMD's treatment. Several of you made the very valid point that I need to trust my LLMD.
When posting on my thread, Traveler asked for an update once I figured out what I was going to do and I'm now here to share that.
I'll share a bit of my history so others reading this will understand where I'm coming from....and how I got to where I'm at right now.....
As is common with many of us, it's hard for me to put faith in any doctor - not because of my Lyme issues but because of what I went through trying to find a doctor that knew how to properly treat thyroid since I suffered needlessly under the care of a succession of 4 doctors. Admittedly, I've also dealt with infidelity and other forms of betrayal so trust doesn't come easy for me any more.
I sought a LLMD when I had a 3rd instance in as many months of feeling like I was coming down with something after taking doxy ala my PCP for a tick bite in mid-July of this year. I'd read about
the cyclical nature of Lyme symptoms and thus my decision to consult a LLMD.
I'd learned enough about
Lyme to know that an ILADS referral was a good place to start and that's how I found the LLMD I met in late September.
I was VERY impressed with his clinical skills since he noted Bells Palsy in me that was so mild that neither I nor my family noticed it....until I repeated at home the cheek-puffing he had me do in his office. (I had forgotten reading that Bells Palsy after a tick bite was slam-dunk for Lyme.)
My LLMD started me on antibiotics immediately and his dx was confirmed by Igenex test results 3 wks. later...5 bands IgM positive for Lyme.
I must admit I started questioning his treatment when reading posts on here - especially in regards to choice/number of meds and their dose sizes. I realized he was following the 2014 ILADS guidelines which do list smaller starting doses than the 2004 guidelines and Dr. Burrascano's 2008 guidelines.
My other area of concern with him was *his* concern that I developed many more symptoms after starting treatment. He didn't agree it was herxing....and changed my antibiotic. Still, I began to wonder if something was missing with his care.
Bottom line, I began taking steps to get a second opinion and accumulated a list of names/contact info from reliable Lyme organizations that offer a referral service along with those shared by the generous members of this forum.
I also began researching Dr. F in West Caldwell since she's within close driving distance of me and someone on here stated that she is "expensive, aggressive, thorough and caring". I liked the last 3 adjectives used but was scared of the first :)
(One of the other ILADS-referred LLMD's near me charges $1K for the first appt, $400 for the follow-up and $300 for subsequent appts....these types of fees are waaayy too rich for my blood and I do consider myself an early case.)
Anyway, I discovered that Dr. F co-authored "Beating Lyme" and I immediately bought it for my Kindle and started reading.
I tried calling Dr. F's office for information and her machine had a message about
being closed for Labor Day....um, it's November. Her office has yet to return my call nor answer the phone *when* I call. It seemed as if the larger universe was speaking to me :)
Anyway, in reading her book, I've become MUCH more confident in my situation and my LLMD. There are so many intricacies associated with Lyme treatment that what I perceived as my extensive research....wasn't enough to appreciate what my LLMD was doing.
In addition, after spending more than 3.5 hrs. with my current LLMD over the course of 3 appointments, it is clear to me that he is VERY receptive and responsive to my research.
While he didn't recommend any supplements other than magnesium and probiotics, he reviewed the list of those I'd been taking and told me to continue with them. He advised me to abstain from adding anything rather than clog my system. I wasn't so sure how I felt about
However, when I reported to him during my 2nd appointment that I'd added several supplements as recommended by Dr. Burrascano in his Diagnostic Hints & Treatment Guidelines, he was quite supportive of the decision.
I'm realizing he's responsive to the type of patient he's treating. It's clear to me that everyone approaches health challenges from a different perspective and some are willing to do more things than others. He definitely had me pinned on my perspective during our very first appointment :)
After reading in "Beating Lyme" details about
the persecution of LLMD's, I think I can appreciate his patient-initiated approach for certain things. He *was* quite firm with his recommendation that I start antibiotics immediately vs. wait for the Igenex results....as he was also with the size of my doxy dose.
I see him again on Friday and already have a list of things I want to discuss with him based upon my latest-greatest research :)
With all of these factors taken into account, I think I found a doctor I can work with and who can help me heal from Lyme.
If the situation changes, I have my folder with LLMD contact info :)
Thanks to all of you who supported me during my confusion and helped me get myself to my current place.
7/14/14 removed nymph deer tick and started 200mg doxy for 3 wks per PCP the next day
9/18/14 met LLMD and was clinically dx'd with Lyme due to Bells Palsy - 3000mg amox
10/23/14 Igenex/CDC positive for Lyme - switched back to 200mg doxy
Symptoms mostly neurological (numbness/tingling/weakness)
Post Edited (cd3764) : 11/16/2014 6:13:02 PM (GMT-7)